When Steve and Rosa Barney?s daughter Isabella, now 4, was born, the couple decided to take a preventative medical measure that felt both mysterious and hopeful: They banked their baby girl?s cord blood with a private company, thinking that its rich stem cells could be there to help treat an unforeseeable issue, such as childhood leukemia. They also considered that it might someday benefit their older son, who suffers from a motor speech disorder called childhood apraxia.
They wound up using it sooner than they thought, and in a way that totally amazed them ? for Isabella?s own apraxia, discovered at 18 months and largely turned around when she was 3, after a 15-minute, cutting-edge procedure, in which a their daughter had an infusion of her own stored cord blood. ?It was like her being born again,? says Steve, of Queens, New York, who notes that he and his wife were stunned by the results.
Cord blood banking is where the stem cells are removed from an newborn?s umbilical cord once it?s been clamped and cut. Those cells are then sent to a lab and frozen as a type of insurance, in case one day, if needed, they can be thawed and used to treat certain health conditions and diseases.
?We got on the ball a bit quicker with her,? Steve explains, having her tested and utilizing early intervention services when she was very young. But she went to preschool at 2 1/2 with ?very limited vocabulary,? he says, and, after preschool, had only about 15 words that could be understood (typically, a 3-year-old would have about 500 words at his or her disposal). Her parents dove into research about using stored cord-blood for treating apraxia, and found a cutting-edge program at Duke University, where stem-cell pioneer Dr. Joanne Kurtzberg had already overseen a handful of similar, successful treatments ? including for a 5-year-old with cerebral palsy, Grace Rosewood, who experienced vast improvements after receiving infusions of her stored cord blood as part of a clinical trial.
?We were still hesitant,? Steve recalls about taking the chance. ?One thing they don?t tell you with banking is that it?s basically a one-time use.? Still, after speaking with another parent about having success with the treatment at Duke, he says, ?it was a no-brainer for me.?
Then came the elaborate process of looking into whether or not Isabella was a good candidate. ?We look at the cord blood, as some banks get a higher quality than others, and we need make sure we have enough cells, with a minimum amount of information, plus good sterility,? says Kurtzberg ? who also runs a public cord-blood bank and Carolina Cord Blood Bank, accepting donations from moms who deliver healthy babies but who have no risks, and is the president of the new Cord Blood Association, created to harmonize education, regulation, and advocacy around the issue of cord-blood banking.
Regarding the decision of whether to bank a baby?s cord-blood privately or publicly, Kurtzberg explains, ?A mom has to know she?s really giving up her rights to the cord blood with a public donation. If it happens to be there, she can have it. There?s no risk, no cost, and is the truly altruistic choice.? Publicly donated cord blood is available to anyone, and doesn?t necessarily have to be a full match; it?s particularly useful for both children and adults who have conditions that cannot be treated with one?s own cord blood ? including some cancers, sickle cell, and metabolic disease.
Isabella received her treatment after receiving a full workup, including tests to make sure there was no genetic disease present. She checked out, and the cord blood was shipped to Duke.
The family was there for three days with their daughter, but the whole infusion process, given through an IV, took just 10 to 15 minutes, Steve says. As Kurtzberg explains, ?The child gets an IV ? sometimes the veins in the feet are easiest to access ? and they get Benadryl and a steroid to prevent reactions.? Then they infuse the cells, which have been washed in a lab, through a drip, similar to how a blood transfusion works. Duke typically does about three to four infusions a week, though that number will soon go up to 10, she says.
?After they put a needle in her foot, she slept for over an hour, and woke up smelling like a can of creamed corn, from the chemicals,? Steve recalls. ?It was the most beautiful smell you could smell.? Isabella?s speech abilities were immediately improved, he adds ? ?like night and day.? She?s now up to about 60 words, he adds, and though is still relying on extra speech-therapy services, ?the biggest thing is that she picks up new words without telling us, and that catches us by surprise all the time.?
The cost of the procedure, Kurtzberg says, averages $7,500 to $10,000, and is only sometimes covered by insurance. In the Barneys? case, the family?s insurance covered about 40 percent. ?It was very worth it,? Steve says ? especially the cord blood banking part. ?I suggest it to everybody, because you just never know.?